October 17, 2025
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- Providing relief to patients with rare diseases across India, the Union Health Ministry has made available generic drugs to support the care and treatment of four ailments– Tyrosinemia-Type 1, Gauchers Disease, Wilson’s Disease, and the Dravet-Lennox Gastaut Syndrome.
- This means that the cost of these drugs will be slashed by anywhere between 60 and 100 times of their current market value.
| Disease | Impact | Drop in cost |
| Tyrosinemia type 1 | used to require an annual expenditure of ₹ 2.2 crore to ₹ 6.5 crore, now costs ₹ 2.5 lakh for the same duration. If untreated, a child dies of the disease by the age of 10. The drug for treating the disease is called Nitisinone. | |
| Gaucher’s Disease | results in liver or spleen enlargement, bone pain and fatigue | Eliglustat capsules- cost brought down from ₹ 1.8-3.6 crore per year to ₹ 3.6 lakh |
| Wilson’s Disease | causes a copper deposit in the liver and psychiatric symptoms | Trientine capsules- from ₹ 2.2 crore to ₹ 2.2 lakh per year |
| Dravet/ Lennox Gastaut Syndrome | causes complex seizure syndromes | Cannabidiol oral solution, from ₹ 7-34 lakh per year to ₹ 1-5 lakh. |
ABOUT RARE DISEASES
- A rare disease is a health condition of particularly low prevalence that affects a small number of people.
- WHO defines rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.
- There are 6,000-8,000 classified rare diseases, but less than 5% have therapies available to treat them.
- It collectively afflicts 6-8% of the population in any country at any given time, so India could have 8.4 crore to 10 crore such cases, according to the Ministry.
- Nearly 80% of these diseases are genetic, which means that symptoms are seen, and require treatment, at an early age.
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